I am currently walking around with a plaster on each foot, the podiatrist came to see me yesterday. It is partly my fault, as she did call me about four weeks ago wanting to come out and cut my nails for me, so it had been five months since they were last done. Part of the reason that someone has to come in to cut them for me is that due to a birth defect my toes are curled and all my nails including my big one, now have nails that curl and grow into the skin. When I was able to reach them and see them clearly, well I had learned how to deal with them, but now, well even the podiatrist agrees that it is a bad idea to have Adam cut them. The extra week meant that they were in a greater mess than normal, even though Adam had had a go at them with a nail file a couple of weeks ago and she had to take a scalpel to two of them to cut and lift the nail out, hence the plasters. It was my right foot that needed the most work, but as always with my body, it is my left that is now the painful one, there really is some warped thing going on in my body as even when the facts say the opposite, it is my left side that suffers the most. This morning, I have found yet another reason not to walk around too much, as the toe on my left foot is crying out ever time it touches the floor, like a little electric shock. Some things don’t change I suppose, it is still the smallest, stupidest little things that cause us bother, I never once thought that PRMS would leave me unable to do something as small as cutting my nails, nor that it would lead to them being attacked by a scalpel. It really is the everyday things, the things that all of us do all our lives without a second thought, that makes our lives difficult once our own abilities have been diminished and it isn’t our illness that makes us feel disabled, but the million and one things that just everyday life require.
I know that the first thing I worried about after diagnosis wasn’t how long I could cook a meal for, or cut my toenails for, it was how long I could work for, I really didn’t understand just how unimportant work really was on the scale of things that life held in the future for me. I doubt anyone ever thinks about how long they can make a cup of coffee for, or carry that cup from the kitchen to the living room without spilling it. We are all so blinkered by the major things that the minor ones never enter our heads and no one ever sits us down and explains the full impact of what our health is going to do to us. It is almost as though everyone assumes that we will or have worked all these things out for ourselves, but I don’t think any of our minds work that way, we are so worried about our financial positions and staying part of the able-bodied world for as long as possible, that the truths of disability never get the slightest look in. I do remember wondering about how long I would be able to walk for, but I never once sat and thought about the reality of life in a wheelchair and how most of the outside world and much of the inside, was going to become an no go area for me. I never thought about being housebound, I do though remember thinking about becoming bedbound, but as where I might be a for a few months at the most before I died. Somehow in my head all the in-between stages didn’t exist and I very much doubt are in any of the heads of those people who have been diagnosed with something similar in the past few years.
It isn’t until the day you try to do something and find that it isn’t as easy as it was the day before, that you suddenly start to think about losing that ability. I remember in the weeks before I lost my left arm, I kept finding myself unable to do silly little things, that the weight of something would suddenly increase and I would drop it. In fact, the day I really noticed it and started to think, was when we were putting up the Christmas tree. I remember struggling with everything and getting more and more frustrated with it and with Adam, as I had to tell him over and over that my arm wasn’t able to do this or that, as he moved at his normal pass rather than jumping at lightening speed to either catch or take from me whatever was in danger. Hanging the decorations on the tree was a total nightmare as it is very much a two-handed job and I had hundreds of tiny breakable ornaments to hang, plus thousands of decorations for the rest of the house other than the trees and no I am not exaggerating, we do have thousands of Christmas decorations. Over that month, things remained at about that level, with odd things happening and problems that kept reoccurring, even then I still brushed it aside and kept telling myself that I couldn’t possible lose my hand, hands don’t just die suddenly. Even then, I never once thought that in the first week of January I was going to wake up one day and find it totally dead, nor that it was going to take a year to get it back to a useable level. Quite often, even when things are staring us in the face waving red flags and shouting, we don’t see it until it does it’s worst and we have no choice but to accept it.
I don’t know if it is willful ignorance or just the normal simple ignorance of the able-bodied of what life as a disabled person really means in its finest detail, but I do know that none of us have the slightest idea of what lies ahead of us. I used to think that someone should write a handbook on becoming disabled slowly, now, well I guess the truth is that few of us would read it and those that did, would simply dismiss it as impossible to happen to them. It doesn’t matter how many peoples lives I read about or I have told to me, I still find myself somehow unable to accept that most of the worst things I come across could happen to me, just as I am sure many who read my blog can’t see the same things I write about happening to them. My arm did teach me one thing, I no longer don’t pay any attention to the small things I feel or see, I try hard to make mental notes, not always the most reliable way of documenting anything, but I try. Should something happen again, well I can see if it was a one-off or a real change. My list of one-offs is huge and is kept company by lists of two-offs, three-offs, four-offs and so on, I still have to workout at exactly what point it falls off the lists and becomes part of life.
Progressive illnesses aren’t always hard to live with because of the things that you have get worse, but because new things keep appearing, one after another. You keep telling yourself that you are fine, that surely nothing else new can happen now, but it does and what we know, has nothing to do with how we handle it, that has everything to do with who we are and how we handled all the things before. It has taken me a long time to understand why my neuro wanted to see me every year, I used to think that it was because I was in this small 5% of MS patients with PRMS, now I realise it was because although he wasn’t saying it, he could actually see my future. I didn’t know until the last few years just how rare some of my symptoms were, as I was already then displaying several of the rarer ones. From everything I can find to read, I now seem to have them all, but if he had told me that then, I don’t know what I would have done, possibly attended his surgery for a couple more year of nods and smiles as he ticked off all the rest. From what I can see, well my path is now set and with luck the new things will be fewer and further apart, as long as they don’t find some other condition lurking that I don’t already know about. I do know though that there are still a million things that I can do right now, that I won’t be doing in the future and I am sure that some of them, well some will be totally unexpected, as no matter how much I read or listen, simply because I am as human, and like it or not, humans do a very good imitation of being an ostrich with their head in the sand.
Read my blog from 2 years ago today – 9/04/13 – An act or a lie > http://bit.ly/YajAqf
I am a bit drained at this second, Jake phoned for his weekly check on my and his calls are getting longer, the longer he is not working. I love the guy, but it really is just too much right now. I am managing to put on that gloss, the “I’m OK” cover, but it is getting harder and harder. Despite everything…..
I HOPE THAT THE NEW PROBLEMS ARE VERY FAR AND VERY FEW AWAY. WE WOULD ALL WISH FOR YOU TO STAY WITH US FOR A LONG TIME….NEVI